Saturday, May 4, 2013


Photo 3 weeks ago with sweet cousins
OF course we were discharged from PICU with  Bryce vomiting his pediasure and that continued for several  days after.  Since Randall's Children's Hospital did not send us home with a pump and did not get a feeding plan together for a non-dairy diet such as the AA diet many SMA children are on, we were very frustrated being released and feeling like we were set up to fail at home.  With perseverance and knowing that my son is pretty strong, we got through the first few days of breathing issues and learning to use the cough machine and BBG.  He got better fairly quickly (thank you all for your prayers).

On May 2nd I took Bryce in for his  15month check up, and while I was so happy to share some of his new tricks (kicking, grabbing, talking) as Bryce is moving better than ever and developing socially , BUT the doctor  wanted to hospitalize Bryce for his weight.  How can I not be heart broken. Why is everything with doctors and dieticians a negotiation  - I know in my heart being in the hospital is far worse than being at home.  I asked my pediatrician, "can you put him back on IV so he won't throw up so much?" he said no.  "What is the difference between at home and in the hospital?" He replied, "they can figure out a feeding plan that works."

 The doctors still wanted to re-hospitalize him.- I replied said no-way- we have to get him off dairy and figure out a new plan - they didn't do it at the PICU when we asked so why would we assume they will help if we go back..   I know its the milk. Who wants to drink milk when they are sick anyways.

 I am learning to explain better to doctors that they  have to set parents up to succeed at home not fail. I suggested, no dairy, I'll try soy since I am not comfortable with vivonex or tolerex (amino acid formulas that may take time for a child to get use to - time that we don't have when our son is so tiny and thin - I will  learn to  make high calorie foods / purrees, and give a bit of the soy formula at night either bolus or via feeding pump so we can get his weight up quickly.    I suggested, to send us a feeding pump, a nurse, teach me how to calculate his protein, calories for catch up... Our PCP agreed. 

  Bryce is NOT a typical SMA-1 child. He is much much stronger.  He is on the mend of this illness!!
May 2nd. Bryce's weight at 15 months - 16.6 lbs.  -5%  uggh....  sigh.....

I believe in my doctors, Steve and I feel confident with our choices. We wish there was a bit more support among mothers of SMA though. The problem is that many think SMA-1 children can't move their feet and arms and don't understand how strong our son really is. Steve and I have always felt that the love and energy we put into his daily activities, the music, dance, play to stimulate physical growth has perhaps been a reason for his continued development. My choice to be at home with him may add to his success. We don't see much regression in the disease except the obvious physical difference with kids his age ,his weight, not wanting to eat by mouth especially when he is sick but overall Bryce is strong for what the doctors predicted back in September. Goes to show me that the power of love and prayer really does exist.

Some local SMA-moms have connected with us and will be stopping by later in the weekend.

We know when our sweetie is sick , his condition is a different story, its pretty scary. We realize that the disease can degenerate slowly or rapidly and each child is different.  My biggest fear is my son losing his swallow.  The next, his getting pneumonia from either a cold or from aspirating. These are real fears that doctors have discussed with us - Again, we can't live in fear though. We have to embrace change, trial and error, and be flexible.

May 3rd a home nurse came by. Educated me on some feeding and positioning of our son.  I was so exhausted, like when Bryce was first born, it was a bit of a blur. At least she talked me though some feeding ideas.

May 4th  We got our feeding pump. The  nurse spent 3 hours setting it up, teaching me how to use it on a continuous 8 our drip at night.  I hope Bryce can gain some weight back with this overnight system. I pray that I can get more rest as I have been feeding him every couple hours, 24-7 for the past two nights.

Currently, I give Bryce a few bottles of soy formula because I need to get the calories in him. I am unsure if I should tube him food at night or just the formula - since Wed. I stopped with all dairy he has not thrown up at all. He is starting to gain weight.

I finished Bryce's one hour feeding from 230 -330 am.  I'll be awake again at 6:30 for the next feeding. I didn't hook him up to the pump tonight. I was exhausted. We will try tomorrow and I hope this helps. I hope he doesn't choke and aspirate in the night - or that's what the doctors tell us to watch for. I can't live in fear - we have to just face each day and go with it.

1 comment:

  1. Hi Jenni,

    Thanks for the update, sounds like you're doing an amazing job and giving little Bryce such good care. Stay strong, you've spent more time with Bryce than anyone so your instincts are important to balance out the doctors' perspectives! I hope the new pump helps out.

    Lot's of love to you and Bryce,